alopecia

Sharing Is Caring

Posted on by akiwifreund

I got accustomed to living in my house in Phoenix; I had a large lot, the walls were brick, and not many sounds penetrated from the outside with the exception of the neighborhood roaming illegal roosters crowing day and night. Conversely, I could make as much noise as I wanted to like singing loudly, and I didn’t really have to worry about disturbing my neighbors. In true Phoenix fashion the curtains were always drawn to keep the sun from heating the house up too much.

Now I’m in an apartment in an old building in Minnesota that is less than 1/6 the size of my house, and besides being aware of the size, I’m aware of touching space. Specifically I know what my neighbor upstairs has for breakfast on weekends, or when her kitten is playing with a toy. I also always wince whenever I drop something on the floor in case there happens to be an apartment below me in the basement (which I still can’t figure out but have heard noises come from that area from time to time like someone is doing prep work in a kitchen).

All winter long I have had a fan going because even though this is an ancient building, the radiators work like ancient screaming, steaming beasts, and I sweat like crazy. I don’t even get under the covers. I also wear my summer pajamas, which are usually big t-shirts or chemises.

Today, however, the radiators are not on, so neither is my fan. It’s just chilly enough for me to be under my covers and for my electric bed pad to be on. I decided to dissemble my fan and wash all the parts because they have been caked with dust like fans are wont to do. In the quiet, I have become aware of certain things.

First, just because my fan has drowned out outside noises to me, doesn’t mean my fan has drowned out my noises to other people. I mean sure – I’m a decent singer. You’re welcome, neighbors. Second, I could hear my upstairs neighbor and a few of her friends giggling. This was not loud giggling. If this was not loud giggling, then what could she hear from ME? I really, really need to work on my whisper-scream, if you know what I mean. Pretty sure I need to stuff the space around my door with towels too. What the other tenants must hear when they pass by my door…! I can see it now: “Hang on, honey, I need to do some soundproofing. Hold that thought.” I just saw the movie “Room.” I wonder if I could soundproof my little sweat box just like the psycho did the shed where he kept the girl imprisoned? I would only use my powers for good and never for evil. I sure would love the luxury of screaming loudly without summoning the cops. Of course, that would work against me too. I have wiped out a few times in the tub and it would be just my luck that I will have to holler for help at some point and not a soul will hear me just because I want to set up my apartment to have noisy sex.

Speaking of sweat box, I tend to dress down when I’m in my apartment and it’s about 80-85 degrees F when the radiators are blasting away. My windows face a business that doesn’t have any windows facing mine and the alley doesn’t get any foot traffic because it’s fenced off on both ends…except for today. When I got up this morning I raised my blinds about a foot so I could see some sunshine. However, at around 9 am, two heads came floating by my windows about 7 feet from where I lay in bed next to the windows – I’m on the first floor, but I’m up a half flight of stairs, so my floor is not exactly flush with the ground floor. Apparently the business was experiencing problems with its ventilation system and a bunch of guys had scaled the fence to work on the wires.

I didn’t make any sudden movements, just laid in bed in my not-safe-for-public-consumption t-shirt and undies, no makeup and no wig. I slowly raised my body pillow so that it blocked me from their sight and when they left the alley temporarily, I jumped out of bed to put my shades back down. I honestly don’t know if they were being polite or unaware by not looking in my windows. Really, I was doing them a favor by sparing them of the full effect of me in all of my glory because it can be quite startling if one isn’t at all prepared.
This is the ultimate dilemma. If spotted, do I flash them my saggy 40+-year-old boobs so they know I’m really a woman and not a dude with a bald head? I mean, if I were transsexual, there is no way I would pay money to have this body. <sigh> I guess this was a good reminder that I shouldn’t run around in my skivvies with the blinds up even a little bit.

Now You See Me

Posted on by akiwifreund

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis

When Life Hands You Lemons

Posted on by akiwifreund

Another article has been posted on Patient Worthy! The picture is of lemons from my tree in Phoenix, something I dearly miss. My body is rebelling and my dates are in retrograde. Where’s my unicorn??

Hello Tremors, My Old Friend

Are You There, God? It’s Me, Chelsea

Posted on by akiwifreund

Judy Blume wrote from the perspective she was most familiar with – her own. It’s what we all do. It’s what makes our stories unique, especially when we look at the story teller as female vs. male, as tall vs. short, as narrow vs. wide, as black vs. white, as wheeled vs. walking.

Something that Judy Blume would have no perspective on is the experience of a girl going through puberty and dealing with questions about her body and her sexuality while also experiencing a physical disability. For instance, would it be so easy to use a tampon if your hands did not have the dexterity and strength that most girls had simply because you had cerebral palsy? It seems unfair that a girl with CP have to advertise to the world that she had to install a brick (aka pad) in her underwear because a tampon was just too damn complicated.

For me, my baldness has flavored many stories. I didn’t choose to lose all my hair. I had absolutely no control on it falling out, and I have no control on it growing back. However, wigs have gotten so good that I can “pass” to the untrained eye. I still get a once- or twice-over.

This woman is hugely disappointed because she has never been catcalled. I’m sure she’s faced many, many types of discrimination, but she is heartbroken because she has never been desired simply for her appearance. She is always going to be liked for her personality, and only after she has been passed over by many, many men. She has never written in her journal that some stranger said something sexual and inappropriate to her, and she told him to fuck off and then ran-walked away.

Right now I only use a cane to help me walk – my walker stays in my closet. But I know a bit about what she feels. I am treated completely different when I’m walking with my cane compared to no cane. I even feel different, more vulnerable without it, because I know that when my feet are slapping together and my face is paralyzed, I’ve lost all desirability.

http://www.huffingtonpost.com/the-establishment/nobody-catcalls-the-woman-in-the-wheelchair_b_9130226.html

 

Seek And Ye Shall Find

Posted on by akiwifreund

Yesterday didn’t strike me as being especially significant. It wasn’t a holiday and my rare disease wasn’t cured, so…

Okay, first of all, I’m paying more attention to the things that bring people to this little blog – and I do mean little. Six months ago I was lucky to get three visitors in a single day. Now my number of visitors is increasing because of the ways that I am networking with other bloggers and the content that I am including.

Nothing could prepare me for some of the search terms indicated by the program, though. (You’re welcome.)

*where does horny women hang in nashville
*fragile handle with care advertise porn
*pantyhose kik names
*stocking fetish social sites in India

Congratulations, and let your freak flag fly. There’s no way for me to identify the people making these searches. I have to point out, though – no one searched for hot, bald, unmarried women?? I mean, it’s been a while since I’ve been proposed to by a total stranger. I hope that issue remedies itself shortly.

In the evening yesterday I took the short bus to a guided meditation session held in a health crisis center. I wasn’t sure how it would go because I tend to just kind of throw my hands up in the air and then rush onto the next thing, whatever that is, to keep my brain stimulated because I get bored easily. During the actual meditation, which really only lasted about 20 minutes, I had to fight against dozing off twice, and luckily I didn’t snore or accidentally pas gas.

Twice I saw an orb rise out of a pool. I only “saw” it to the left of my left eye. I told some of the attendees during our recap about my experience and let them know that their vibes had a specific effect on me. One woman asked me if I had always been able to read strangers’ energy. I have, but I have never really put effort into following through on what I read; usually I push it away or ignore it, which is actually very destructive because then everything gets a free pass into my life and I end up hip deep in crap.

Whatever happened, the universe made a connection appear for me. My short bus driver made a stop after mine to pick up a lady in a wheelchair. She greeted me when she was lifted into the van, and immediately we started chatting. I asked her if she had just come from a dance performance because the building she had come out of was a theater specifically set up for that purpose. The answer was no, in fact; she was on the board for VSA Minnesota, the “state organization on arts and disability” (I got that from the website).

I told her a bit about my arts background as well as what I’m doing now (which is admittedly very little because my days are consumed by endless doctor appointments), and she gave me three organizations to get involved with besides her own to network, meet new people, be creative, and maybe even apply for a grant in my area of interest.

To the casual observer, this may not seem to be a big deal. It just drove home to me the fact that this state is so much more inclusive than where I moved from. I never, ever would have had so many resources to access for my particular physical challenges if I would have stayed in Arizona. I wouldn’t have been able to even ride the short bus because of their strict rules regarding who should be allowed to ride.

Really, meeting and speaking to that woman last night helped to open my eyes to the fact that even though I’ve got these major problems, I might actually be able to find a group of people who can see art where others may only see injury and illness. I am still working on retraining my brain to accept this as my new reality because the doctors have refused to keep operating on me. I still really miss driving my car while harmonizing at the top of my lungs.

Chelsea Handler Is My Soul Mate

Posted on by akiwifreund

I just finished watching season 1, episode 1 of the series “Chelsea Does” titled “Chelsea Does Marriage.”

Okay, there are a few ways in which we are not so similar. First, she’s a well-known star. Me, I’m lucky if my sister’s dogs remember me. Second, she can drink like a fish. I can’t because I have all of these crazy diseases (but just for the record, Chelsea, in my 20s and early 30s, I could have kept up swimmingly). Third, she’s not a fan of “fatties.” Since I’m stuck in bed, I’m the opposite of skinny, and I am severely limited on physical activity.

But here is how we are so similar: First, we share the same first name (and it’s spelled correctly). Second, we are very close in age; I’m actually 9 months older than her. Third, we both are very outspoken. Fourth, our father figures have told us and the men we have dated – if we like the men enough to bring them around, which rarely happens – that we are very strong women, and require a strong man.

Getting into the particulars, Chelsea and I feel the same way about the wedding dress, the wedding ceremony, and what comes before and after the big day – we just don’t get it. I never imagined a wedding day or what I would wear as a dress or even what it would be like to want to be hitched to someone for the rest of my life. I was lucky enough to be asked to be a part of the wedding party when two good friends got married, but it was very non-traditional. She wore a black dress, we went shopping for her black knee-high boots, and her wedding march music included “Flash’s Theme” by Queen. He wore a nice button-down shirt and even got a haircut for the big day. I think how my friends treated their special day was about the same level as I would want mine.

Chelsea and I have done a lot of dating and have had a lot of sex. In fact, I felt a little sorry for her because by my calculations of when the show was being taped, I was actually getting more ass than she was. That just goes to show that men have no standards – I mean, c’mon, I’m a bald woman who is confined to bed for about 22 of every 24 hours, and guys still wanna slip me the mickey.

But we’re kind of getting to the point in our lives (and Jesus H., don’t say it’s because we’ve hit 40) that we want to see how different our lives would be if we actually had someone in our corner. And we also want to be the type of people to say, “Yes, I love ______ deeply and he is my best friend.” We need strong men who aren’t going to act all butt hurt about everything that makes us us. We don’t want to be life coaches. We want men to be comfortable in their own skin and to look around and say, “Oh, I’m going to take care of this” instead of us having to beg, plead and bully someone to put on his big boy pants and do it, and do it right the first time.

Chelsea, I totally get it on Eric Bana. He is very masculine and he loves his wife deeply, and he doesn’t let anyone cross the line or share that space he saves for his wife. I think that when spouses are that loving, we see a certain relaxation in their faces. I’m not saying that I imagine their lives are perfect or they have no struggles. I’m saying that they know that if shit goes down, they have this life partner who is going to go through the shit with them instead of making a run for the life boats. Ultimately, we want someone to have that same look with us, and we want to see it on our own faces for a change.

By contrast, we are turned off by men who are overeager. We smell insincerity as if it’s a noxious blend of Avon perfume and cigarettes. We know when men are rubbernecking to make sure there isn’t somebody better than us lurking around that they might rather hook up with, and we simply don’t have time for that. We also don’t deserve to be abandoned.

The love we give to the men who truly deserve it is hard-earned. Chelsea and I have sharp tongues and a very thin filter. Fellow humans give us our best material, so men, if you fail us, your fall will be very painful. If you live up to the task, it will be like seeing the sun for the first time.

I don’t know about Chelsea, but I’m still taking applications.

Lastly, <sigh>, here is an article where the reporter tried to put Chelsea in a box. “Is this reality television or a documentary?” I would choose neither. Just let it be.

http://www.theatlantic.com/entertainment/archive/2016/01/chelsea-does-netflix-review/426951/

Look Me In The Eye

Posted on by akiwifreund

On Friday, I wrapped up (I hope) a series of daily appointments at the University of Minnesota with a visit to an ophthalmologist.

Something happened while I was waiting to be seen. Actually, something was brewing the week before, but I wanted to deny it was happening, or would get worse. I think it has reappeared after more than five years because this is the first time since July 2011 that I have not had any successful shunt surgeries for 8+ months, and my brain/brain stem are getting seriously stressed.

Normally my symptoms resolve and I can open my eyes all the way when I’m laying flat. That’s the result of cerebrospinal fluid moving away from wherever it’s pooling and pressing on the brain stem and the nerve roots leading to my face. However, the tremors do not resolve with laying down. I remember being in an MRI machine in August of 2010 and the techs yelling at me to hold still because they couldn’t get clear pictures of my neck. I had absolutely no control over the tremors. This time around, for about a week I could feel the tremors in my neck when I laid down to sleep at night. I hoped it was the worst they would get.

Unfortunately, I have not been spared. The tremors are exhausting. And it’s bad enough that the world is already swimming around me – but the tremors really scramble my brain. They make my head constantly nod “yes.” I asked the resident doctor examining me for the ophthalmology test to document the tremors, since they started when I was sitting in a waiting area close to the examining room where I would be seen.

The reason why I insisted on seeing the ophthalmologist is that I wanted to have my vision problems documented – and not how they wished I could see, but what I could actually see. It’s going to take 12-15 months for me to get a hearing with a judge for a disability determination; I want to load the judge up with proof.

A tech took me through a ptosis vision field test. In the great scheme of things, it was pretty benign; no one had to stab me with needles or get me to take my clothes off. First they do the test without altering the eye to “see” what I can see. Then after that eye is done, the tech has to tape the eyelid so that at least 20% more of the lid is lifted. Have you seen the “tape game” by Jimmy Fallon? This is what it felt like. For extra special fun, my head was nodding so much that the tech had to grab my head and hold it in place for the test.

 

Talk To Your Doctor About Your GD ED

Posted on by akiwifreund

A week or so ago, when I was being driven to my daily appointment to get the dressing on my wound changed, the cabbie asked me if I was single. He was Somalian and he told me how if I visited his village, I would have many offers of marriage within the first hour. In his culture, it’s important to visit your neighbors and check on them. They value personal bonds. They also obviously have a serious gossip network, which explains why everyone would know I’m single in a very short amount of time. I secretly wondered if I could demand goats as my bride price.

I didn’t ask, but I wondered if he was mistaking me to be about 10 years younger than I am – that happens often. I think that the paralysis of my face actually works like Botox gone bad. I also didn’t tell him that I am not able to have children (thanks to my hysterectomy 5 years ago – BEST DECISION EVER). That aside, I’m already at an age where bearing children would be very risky. I didn’t bring up the fact that I’m also completely bald, as I think that would be the last on a long list of deterrents.

I was hit up by a 24-year-old on OKCupid today asking if 24 was too young. I wrote back that it was. It’s another somewhat terrible reminder that I am middle-aged.

Another reminder that I am middle aged: I date middle-aged men. I seem to have hit the bubble where their penises don’t stay hard or even get hard. We get to the awkward point where they are trying to shake the shit out of their dicks to force the blood to go down there, or they are trying to stuff their very soft unit in me and get pissy if it just flops out.

Then they blame me. I’m “too excited.” I’m “in the wrong position.” My “legs aren’t the right length.”

Physiologically, I am not the problem. I’m 5’5″and not considered short. Even though I had a hysterectomy, I kept my ovaries, which means that my hormones are still coursing through my body – I haven’t gone through “the change” yet. Believe me when I say that I am more than sufficiently able to welcome a foreign object.

What’s the problem with these guys? Well, weight is an issue. I fully acknowledge that I am overweight, and I notice the difference in my ability to perform bedroom gymnastics according to how overweight I am (my weight fluctuates). These guys are sporting the full pregnant belly, though. I imagine a big elastic band resting at their hips, cutting off the blood supply.  They also huff and puff from the effort; I often have to ask if they are getting tired and if they would like to change things up.

One guy was overweight (6’1″ and over 300 lbs) and insulin-dependent. Diabetes affects blood flow greatly – that’s why doctors recommend that diabetics stay away from pedicures. Any tiny nick to the skin could cause a huge wound because a lack of blood flow stymies our body’s repair mechanisms. So, yeah, his penis was definitely having blood flow issues.

I hate the smell of cigarettes and I’m allergic to the smoke, but smoking also affects blood flow to the extremities.

Some men are very accustomed to jacking off to porn. It’s alarming how much they abuse their poor penises. It’s like angry jacking off, or jackrabbit fast. There’s no way my very human body is going to be able to replicate that. It gets to the point where the men only respond to this violent kind of touch. One of my exes was a smoker AND could only do the jackrabbit thing, so when he was ready, I just had to make sure my arms and legs didn’t touch him so he could pound away. You know in movies when EMTs or doctors are trying to use the paddles to revive a patient and they yell “Clear!” to make sure no one is touching the patient when the current goes out? That’s pretty much what I had to do for the jackrabbit guy. Clear!

So guys, talk to your doctor about your goddamn erectile dysfunction. You might hear something you don’t want to about lifestyle changes. But if you want to screw like that 24-year-old who wants to bang me, then you might have to make some changes. Hell, the rest of your body may feel better too.

If you’re not willing to put in the work, then learn how to do other things that don’t involve the penis.

Don’t ever, EVER, blame me for your ED.

Time’s “Ten Things You Didn’t Know About Men, Backed By Research”

Posted on by akiwifreund

By Eric Barker (writes Barking Up the Wrong Tree.)

Scientific studies show:

— Being too rich and good-looking can actually hurt a man. Then again, marriage may be a bad deal for handsome guys.

— You can predict how many women a man has slept with by how funny he is.

— Yes, most TV commercials make men look like morons.

— Companies pay women more if a male CEO has a daughter.

— Poor and hungry men prefer heavier women. Rich and full guys like skinny girls.

— Attractive TV anchors make men unable to remember the news.

— What’s the chance that a man’s kids are not really his, biologically?

— Punching things does make men feel better.

— If men’s jobs didn’t affect their ability to attract women they’d be far less ambitious.

— Men fake orgasms too.

 

The first item that caught my eye was the second on the list, predicting how many women a guy has banged according to how funny he is. Testify! But what is harder to match up is the type of humor. I deeply value humor, but I’m a snob. I can’t watch The Simpsons or Family Guy. I just can’t. Even if the satire might be something I admire, I can’t relate to cartoons with moving mouths. I was cured of that by age 10.

Second item of note: Attractive TV anchors. I mean, we’ve all seen the “naked news” spots, right? Usually it’s the damn Russians putting porn stars in front of a camera. Apparently, they don’t have to be naked for dudes to lose their minds.

Third item of note: If men’s jobs didn’t affect their ability to attract women, they’d be far less ambitious. I know some guys who are there already. They are not currently camping out in my bed, nor will it be likely that they will. I have never gone around with the attitude of “I’m lazy” but I’ve heard so many men say that. More importantly, after they say it, they demonstrate it. I believe them, I have no grand illusions of changing them, and they need to stay far away from me.

I was hit up on OKCupid last night by the I’m-separated-but-probably-going-back-to-my-wife-and-kids guy. He got a new screen name.
Him: Still horny?
Me: You got a new screen name and you ghosted me. (I wanted to say, “No, fucker, I have a new hole in my ass, and not by choice.” This whole bedsore thing is really cramping my style.)
Him: I got fooled into giving my phone number out to women who live in Russia and the Philippines so I decided to start new
Did you meet someone
Me: Doesn’t matter if I did or not. No one wants to hear they are a consolation prize.
Him: just asking
Me: No you weren’t. You were trying to make a bootie call, I am just not picking up.
Him: sorry just asking

Oh, yes, he’s just so innocent! He disappeared after November and he thinks the best, most innocuous way to greet me is “Still horny?” No wonder he has only slept with 4 people in his 39 years. (I was number 4.) I sure hope his wife lets him come back home soon. I’m done raising him.

‘Scuse me, I’m off to find my poor and hungry guy, I hear they like big asses on their ladies.

 

Digging for Gold

Posted on by akiwifreund

This morning, when I retrieved my mail while I was waiting for my sister and her husband to arrive, I received a notice from the Social Security Administration regarding my disability appeal. They said:

*You have the ability to stand and walk without assistance. (That’s a blatant lie – I use my cane for everything.)
*You have the ability to use your hands and arms to perform tasks. (Apparently it’s not a requirement for me to see what I’m doing.)
*You are able to get along with other people for short periods of time. (It’s called Minnesota Nice, bitches.)

“We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in the file, we have determined that you can adjust to other work.”

What would be really helpful is if they included a list of employers who had job offers for me and would not require me to be upright at any time. I can’t see well enough to travel to a location outside of my home, and most employers at least want an interview. So their insistence that I work “somewhere” is pretty weak, considering they don’t have an prospects lined up for me. (I don’t want to hear, “That’s how they do it.” I know they’re assholes.)

The next step is for my attorney to file a request for a hearing, which I understand takes 12-15 months to occur. In the meantime I’ll continue to go to doctor visits and try to find someone who can put a name on this disease and tell me what to expect.

This morning I went to the surgeon’s office at the U of MN to have my wound checked. When he put a fair amount of pressure on it, I started yelping, which led him to believe that there is still some pockets of pus hanging out back there.

Rather than going through the process of shooting me up with Lidocaine and slicing down deeper and purging out more junk, the surgeon took the stick end of a swab and used that to dig around in my wound – think of it as a meat tenderizer, he just kinda made hamburger out of my flesh – without any topical numbing whatsoever. I broke out in a sweat and I had tears rolling down my face. I knew I had to lay still but I was also fighting to get away from him and just make the PAIN STOP.

He said he was stepping out for a few minutes to allow the bleeding to die down; about 10 minutes and a good, sobbing cry later, his nurse came in to re-dress the wound. I’m glad I had that time to myself.